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Insight eNewsletter - October 2010 issue

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This issue of Insight is all about seeing beyond vision loss. Meet four amazing people who challenge everyday assumptions about people who are blind or partially sighted. Learn about CNIB’s new resource for people living with AMD and take some of the stress out of gift giving by checking out CNIB’s most sought-after products. As always we appreciate your feedback at insight@cnib.ca.

Could you paint a landscape you’d never set eyes on? Run a marathon without ever seeing the route? Determination and a positive attitude helped these four people do that and much more. From artist to medical doctor, they prove that, with a little help and a lot of determination, it’s possible to overcome the challenges of vision loss.

Esref Armagan, artist

Turkish artist Esref Armagan proves that you can capture the world around you without ever seeing it. Though he was born blind, Esref has not only taught himself to write and print, but he’s also built a remarkably successful career as a painter.

His process works like this: First, using a braille stylus, he etches an outline of his drawing on a canvas. Then he applies oil paint with his fingers – one colour at a time so that the colours don’t smear, waiting two or three days for each colour to dry before moving on to the next. It’s a technique that requires incredible patience, and he’s been perfecting it for over 35 years.

And though he’s never seen a rushing waterfall, a glittering sunset or a rocky mountain landscape, Esref has painted them all – in vivid colour, with incredible life and realism. His talent has made him famous the world over.

Recently Esref was asked to paint the new Volvo S60 as part of the company’s “Volvo. For Life.” marketing campaign. His painting was auctioned off on eBay for more than US $3,000, with proceeds going towards the World Blind Union.

Karlene Nation, reporter and producer

In the summer of 1998, Karlene Nation received life-changing news: after being rushed to the hospital because of mind-numbing headaches, doctors discovered a brain tumor at the base of her skull.

As a result of the tumor she had completely lost her vision by the time she was going into surgery. When she awoke, doctors were surprised to find that she hadn’t lost all of her sight permanently. She had, however, lost 50 percent of her sight and was seeing double. Two surgeries and months of rehabilitation later, she had no peripheral vision and permanent double vision. Doctors told her this would never improve.

But she’s not one to shy away from challenge.

Despite her vision loss, Karlene is excelling in a career as a writer, reporter and producer at CTV and CFTO. And last year, she was honoured with the African Canadian Achievement Award.

Rose Sarkany, marathon runner

Rose Sarkany doesn’t get discouraged easily. The 45-year-old Port Alberni, B.C., resident has lost 90 per cent of her vision and much of her hearing to a condition called Usher Syndrome. But that hasn't stopped her from pursuing her fitness goals and training hard as a long distance marathon runner. In fact, it motivated her to help other people with vision loss get out on the track.

Her campaign started just weeks before the most exciting event that she had ever participated in: the Boston Marathon. She’d registered as a visually impaired runner in that event and realized that no such category existed back home in B.C. She wanted to change that.

It started with a web page on Facebook titled “Running for Change: to Add Visually Impaired Category to Marathons.” Her first success was the Royal Victoria Marathon in 2009, which Rose ran in full with her guide. Then this year, she successfully created a “visually impaired” category in the BMO Vancouver Marathon. She ran the marathon on May 3, 2010, with her guide Chris Morrison.

Rose plans to continue this quest across Canada to raise awareness for blind athletes in the general public and encourage people with vision loss to lead more active lives.

Dr. Stanley Wainapel, doctor

At eight years old, Stanley Wainapel received a diagnosis of choroideremia, a rare retinal disorder that causes eventual blindness.

It was a tough blow – but he wasn’t about to let it hold him back from achieving his dreams. He went on to graduate from medical school at Boston University despite his failing vision.

It wasn’t until 1994, when he’d just lost nearly half his vision over the course of three years, that he started to feel self doubt creep into his life. That’s when a friend stepped in and suggested he attend a National Federation for the Blind (NFB) conference.

At that time, Dr. Wainapel had received only the most basic mobility training. But, in a speech he gave at an NFB conference a few years ago, he said it changed his life – giving an education not only in mobility, but also nobility and humility.

Within six months of that conference, Dr. Wainapel bought a computer with all the appropriate assistive technology he needed, took computer training and was embracing a new lease on life.

Dr. Stanley F. Wainapel is now the clinical director of rehabilitation medicine at Montefiore Medical Center in the Bronx, NY, where he has worked on and off for 20 years. Now, at 63, he treats about 200 patients each month.

A diagnosis of AMD can be frightening. Age-related macular degeneration is the leading cause of vision loss in Canada. With 90,000 Canadians experiencing vision loss because of the condition, CNIB has launched EyeConnect AMD Support, a resource program providing education, support and connection to services, specifically for those with AMD. Supported by Novartis Pharmaceuticals Canada, the program helps people who have AMD regain their independence, learn new skills and fully participate in life.

A comprehensive web portal, EyeConnectAMD.ca and “The Life You Want Is Still in Sight” support guide explain AMD in plain language.

Simply put, AMD is an eye condition that causes the loss of central vision. The macula is a small area in the retina responsible for your central vision, both far and near, as well as colour perception. The macula allows you to see fine details clearly and perform activities such as reading and driving. When you have AMD, it is the macula that gets damaged. There are two kinds of AMD, dry and wet and they affect people differently.

AMD can be challenging not only for those living with the disease, but also for those providing care. EyeConnect AMD Support provides a window into the personal stories of five individuals dealing with the disease. Five AMD “peers” talk about the diagnosis, their fears and how CNIB has helped them with products and services.

Since 1997, Barbara Wall’s husband Bill has had wet AMD in both eyes.

“CNIB services have been better than excellent,” she says. “We’ve had support workers teach Bill how to walk outdoors safely using a cane and to listen for the flow of traffic. With this guidance, I feel more confident about Bill getting around safely by himself.”

The guide and the web portal also offer valuable information to those who don’t have AMD, helping them to keep their vision strong. Featured in the guide, the Amsler Grid is an easy, at-home tool used to detect early signs of AMD. Meanwhile, the web portal features a quick quiz that will generate a personalized report on an individual’s AMD risk; it also suggests helpful lifestyle changes to minimize risk, like wearing sunglasses with proper UV protection, eating more leafy greens and maintaining a healthy body weight.

According to AMD peer Shirley Johnson, “When you have AMD, the world doesn’t end. You can’t give up. Get out there and look for support. CNIB is such a great resource, but you have to make sure you make the effort to contact them. They will do everything they can to help you.”

CNIB is proud to be relaunching our website, www.cnib.ca, with a brand new look and feel, and an emphasis on a better user experience.

This new site brings CNIB into a more current position for anyone who visits us online. We strive to be the model of accessibility and design.

The site identifies personas such as health care provider, newly diagnosed, or caregiver. You can now click on a button on the homepage that will take you to areas tailored specifically to the needs and interests of unique visitors. The benefit of this new approach is that there will always be helpful and relevant links on these pages.

The site will also feature an “In Your Community” tool that will filter content specific to your geographic area. For instance, if you’re accessing the site from Alberta then news and events happening in Alberta will be featured along the right side of the browser window.

However, you’ll always have the option of accessing news and events nationwide or in other communities.

We have also consolidated our request-for-service forms. This means that there is an increased efficiency when it comes to requesting services or additional information from CNIB.

We have made major improvements with the new site, but we are excited to be reaching even further! We are always looking for new ways to make our site even better. Make sure to visit the site often to check out features that are still to come, including an online community with discussion threads.

CNIB carries a variety of stylish, beautifully designed talking watches featuring white dials and easy-to-see, bold black hands. These watches announce the time clearly at a touch of a button and are available with or without an alarm. Available in both men’s and ladies’ with a choice of finishes and watch band styles, these watches make a perfect holiday gift.